Friday, March 22, 2013

I had my 6 month PCOS checkup about a week ago, and there was good and bad news. The good news is that I had no enlarged cysts, so my next ultrasound can wait another 6 months. The bad news is that some of my bloodwork came back a little wonky.

My cortisol was high, which is actually normal for me. (That explains why I'm awake so late, sleepy so long in the morning, and sleepy so much during the day...) I've also moved closer to being diabetic. My fasting insulin and fasting blood sugar were both high, so my doctor has added another medication in hopes that it will bring thing down a bit to more manageable level. The new med, junuvia, is just once a day, so it's not too bad. My triglyceride level was also high, though overall my cholesterol looked great.

Jamie and I just bought a treadmill (putting it together is our weekend project!), so I'm going to start walking on that every night after we get the kids to bed. My BMI was in the normal range, but I'm hoping that bringing it down closer to the low end will help with everything, also.

Friday, March 15, 2013

Miles was transferred to the Abercrombie building on Friday after 24 hours in the PICU. He had been officially diagnosed with Staph Scalded Skin Syndrome (SSSS), and was on morphine and antibiotics, along with allergy medication to control the itching, and Aquaphor rubdowns to protect his skin as much as possible from the blistering.

Besides knowing that a regular room meant that his condition was improving, the room itself was a big improvement over the PICU: there was a bathroom in the room (with a shower!!), which meant Jamie and I no longer had to make the quarter-mile walk to the visitor's restroom; there was a couch (plastic, but present) and an armchair to sleep in; and Miles no longer had to have the monitors all over his chest, so there were fewer cords to deal with. Of course, the stickers from the monitors tore all of his skin off when they came off, so they had to stay until they fell off on their own. But the cords could be unclipped!

The next few days are a bit of a blur. There was constant DVD watching (more shows and movies than Miles had ever watched before in his life), frequent trips to the bedside commode (one of us carrying Miles while the other managed the IV cord), and nonstop monitoring of Miles's improvement, by us and by the medical staff.

Miles did have another eye exam (his third, I think), along with a topical treatment to try to heal some of the skin damage on his inner eyelids. Jamie and I were asked to leave the room for the procedure, and when the shocked nurse spoke to us afterward, she said she would recommend that he be sedated if another eye exam had to be done. She had no idea it would be as traumatic as it was.

Miles's diagnosis and treatment, seen under his Lightning McQueen balloon

A brief respite from DVD-watching

Watching The Jungle Book with all of his animals - kangaroo, Nemo, Logan the buffalo...

One of the "Child Life" specialists even brought in some toys and books for Miles to enjoy during his stay. He loved having the cars to play with, since he was stuck in bed!

Playing with cars with his damaged right hand and new IV in his right arm

At one point, Miles IV came out, which was awful. When
the IV had originally been placed (at the first hospital), they had
tried to place it in his right hand. That vein was blown, and when they
removed the tape, just a few seconds after placing it, the skin on the
back of his hand went with it. They then placed the IV in his left hand,
where it remained for the next few days. At one point, a nurse
undertook a long and delicate process to try to remove all of the tape
and gauze surrounding it without damaging Miles's skin and arm. She did
an amazing job, and replaced it with a contraption that put as little
tape as possible back onto his skin. When the IV in his left hand came out, his nurse called in a special unit that did nothing but place IVs for their entire 12-hour shift. They came in with an ultrasound machine and used a wand to find the vein in his right arm; the IV was placed quickly and fairly painlessly, and I could have kissed them for sparing him more trauma.

Slowly but surely, Miles began to improve. His skin started to get better; I even posted some pictures of his healing face online - something I didn't do at the beginning of the ordeal, since his condition had been so bad. He even got his energy and personality back, and started making jokes again. After a while, he was able to walk to the potty instead of having to be carried, though we had to watch him carefully since he was still weak.

My favorite times were the times his bedding was changed - I got to hold him! I would wear a soft hoodie that completely covered my arms, and I couldn't really put my arms around him since I had to be careful not to put any pressure on his skin, but it was the closest I could get to cuddling him. He would sit on his lap, leaning back a bit against me, and I could have my arms up against his sides a little bit. Heaven.

Watching a show

Watching The Jungle Book

Making silly faces

And along with the healing came the ability for him to SLEEP. The last 2 nights in the hospital, Miles slept the longest he had slept in... well, ever, I think.

He enjoyed eating breakfast in bed, and loved to order us about - "Juice! Cwanberry!" And we were so happy to have our boy back. We had more visitors Sunday - my friends & colleagues Terri & Therese. Miles had a lot of energy back by then, and bounced around (naked, of course) on the bed the whole time they were there.

One thing he loved about the hospital, at least the last day or two - getting full-body rubdowns with Aquaphor by his nurses. He would lay on the bed with a huge grin on his face and inform them of any spot they may have missed.

Sunday night, Miles's IV was disconnected and he was given an oral antibiotic instead of IV. He was also given a dose of Tylenol with codeine instead of morphine - the last painkiller he took. The switch to oral antibiotics and the pain tolerance were the last things the doctors needed to monitor before he'd be able to be discharged.

Breakfast in bed.

Monday, we had our final visit from the team of pediatricians, who gave us Miles's discharge orders. We were able to leave the hospital room at 12:30pm, with Miles clothed (in pajamas, anyway) for the first time since Thursday morning. Jamie brought the car around, and we headed home.

Miles is doing great now, a week and a half after being discharged. He finished his oral antibiotics yesterday, and the only thing we're doing now is rubbing Aquaphor on him where needed. (He's continuing to peel, though it's just superficial now. We're assuming this will go away in a couple of weeks, and is just a residual effect.)

Jamie and I both seem to have a bit of PTSD from the whole thing. We both get emotional about it still, and have times during the day when we feel a desperate need to just give Miles a big hug and see his twinkling eyes. Gisèle had a wonderful time with Nana, but she occasionally says, out of the blue, "I hope Miles never has to go the hospital again." She also has had some abnormally bad behavior lately (as has he), which could be related to the recent upheaval in our lives.

But things are settling back to normal. And everyone is fairly healthy. (The definitive strep test on Miles from the hospital came back negative, by the way - he never had strep.) And God is GOOD. Thank you all for the many prayers you sent up during this time; every one of them was felt.

Thursday, March 14, 2013

Miles couldn't get comfortable and could hardly even lay down without pain. Jamie and I took turns keeping him company in his room, but nothing we were able to do helped.

When 6am came, we got Gisele ready for school and took her to Kindergarten. We planned for me to go in to work (since I hadn't been there in almost a week) and for Jamie to take Miles back in to the doctor as soon as her office opened at 8:30.

On the way to work, I called Mom and broke down. After talking it through, I decided to take her advice and take Miles to the ER. I called Jamie, who was relieved I had come to the same conclusion he had, and then called a friend and colleague to let her know what was happening, and that I wouldn't be in after all. When I returned home, I quickly packed an overnight bag for me while Jamie showered and got Miles ready to go. He didn't want to go anywhere, but was too weak to really protest.

As we headed to the ER about 7 minutes from the house, Jamie called and spoke to a nurse at the pediatrician's office. After reiterating that we didn't want to just bring him back in to the office, she suggested we take him directly to the TX Children's Hospital on the west side of Houston since they were pediatric specialists; apparently the ER we had planned to take him to had no pediatricians on staff. We agreed and made the 25 minute drive there. When we arrived, Jamie barely had time to sit down with Miles before they took him back into a triage room and hooked him up to an IV.

In the triage room of the ER

Not long after, they started him on an antibiotic as they tried to figure out what was wrong. They thought it could be Stevens Johnson Syndrome, Kawasaki disease, a Staph infection... They also started him on morphine to control his pain.

Miles's IV set-up, delivering fluid & morphine

After a few hours, we were told he would be transferred by Kangaroo Crew (a mobile ICU unit that specialized in transferring pediatric cases) to TX Childrens in the Med Center. The doctor who told us this thought he would be in the Progressive Care Unit, one step down from the ICU. Around this time, Dad called with the news that Mom was flying down in the morning. I don't know if I even properly thanked him, because I couldn't stop crying, I was so relieved. Her coming meant that we wouldn't have to worry about Gisèle, who would be over the moon to have Nana with her, and Jamie would be able to stay with me and Miles at the hospital. Jamie then headed home to pick Gisèle up from school while I stayed with Miles. (A friend offered to stay the night with Gisele, so I knew Jamie would be able to join us at the hospital later.) When the Kangaroo Crew arrived and assessed Miles, they decided to take him directly to the Pediatric Intensive Care Unit (PICU), and radioed ahead to let them know we were on our way.

Being prepped for transport

Riding in the ambulance was awful, though the crew was nice. The driver and passenger seats are separated from the back, and I couldn't see anything going on. I knew Miles was well taken care of by the three EMTs with him, but occasionally I could hear him crying, sometimes specifically asking for me, and I couldn't reassure him. What's worse, we were stuck in Houston traffic at rush hour, trying to make our way downtown while the Rodeo was going on. The ride to the hospital took over an hour.

The view as we waited in traffic

Headed to the Med Ctr

When we arrived, Miles was wheeled directly to the PICU, and was diagnosed fairly quickly with Staphylococcal Scalded Skin Syndrome. (SSSS) (Click the link for a very short overview.) They kept his IV fluids & morphine going and added an allergy medication since the morphine was adding to his itchiness. Thankfully, Miles was able to sleep for a little while.

Sleeping sideways in the hospital bed, with his "Rudolph toe" shining through the blankets.

Pretty soon, he had his first visitor - my boss, Dean. Poor Dean got
to see Miles at his worst, because I think he was there when the eye
doctor came for her first visit.

The delicate skin on
the inside of Miles's eyelids had basically liquified, gluing his eyes
together for the most part. He could open one eye a slit, but that was
all. The opthamologist had to do an eye exam because Staph can damage
your vision; she had to see if it was necessary to begin treating
his eyes. The problem with SSSS is that
the slightest pressure on your skin causes it come off. The
opthamologist used her gloved fingers to pry open Miles's eyes, tearing
off the skin on and below both eyelids, leaving him bleeding
and sobbing. It was, hands-down, the worst part of the hospital stay.

I feel like I ignored Dean the whole time he was there, but I was so thankful I wasn't alone at that time. Jamie wanted desperately to be there, but couldn't come back to the hospital until Gisèle had someone at home with her. When Jamie did make it back, we both tried to get some sleep. The PICU is not designed for visitors to be comfortable, though. We had three chairs between the two of us, and a small pile of blankets and pillows. (We needed all of them, too - we found out later that the room's temp had mistakenly been set on 60 degrees.) Needless to say, neither of us slept.

Taken from my chair looking toward Jamie's two.

The next morning, Jamie left early to get back home. He had to get Gisèle ready for school and then pick up Mom from the airport. He would bring her back to the hospital with him, where she would stay most of the day before going home to stay with Gisèle. We still didn't know at this point how long Miles would be there, or how even how long he would be in the PICU.

I spent my time that morning with my hand on the top of Miles's head - the only part of him I could touch, since the skin there was staying put. I hated not being able to hug and cuddle him, which is a mama's natural instinct when her baby is hurting.

This part of him was fine...

Jamie had thought ahead and packed the portable DVD player, so Miles spent the day watching Dora, Diego, Team Umizoomi, and Disney movies through his slitted, swollen eyes. His new kangaroo, a gift from the Kangaroo Crew, kept him company.

He had more visitors that morning - Dean came again (brave man, after the day before!), and Adam, another friend and pastor. I was so thankful to have support and friendly faces. The PICU nurses we had overnight had been wonderful, but the day nurse was not friendly or helpful, and I was feeling very alone before they came.

One difficult issue we hadn't really anticipated was that, with Miles potty-trained, he didn't want to pee in a pull-up while in the hospital because he felt like that would be having an accident, even though everyone tried to tell him that "in the hospital, it's NOT an accident!" (And the pull-up hurt his skin.) The other options were using an oddly-shaped container while sitting in bed, or being carried to a bedside commode. We tried the container a few times, but it resulted in spilling or accidents just about every time, which necessitated bedding changes. (And any movement was agony on Miles's skin.) That just left carrying him to the bedside commode. Lifting him was torture for us both; for Miles, because it caused the skin on his back and back of the legs to tear, and for me because I knew I was hurting him every time I did it. The daytime nurse somehow managed to be out of the room and out of earshot every time Miles needed to go potty, which left me trying to carry him and manage all of his IV and monitor cords by myself. It was awful. Miles was on a PCA for his morphine, which meant that we had a button we could push to give him an extra boost whenever we thought he needed it (similar to an epidural, for those that are familiar with it.) He got a boost before or after every trip to the potty.

Luckily, later that day, Jamie arrived with Mom! After she came in (and was greeted with plenty of tears on my part), I took the opportunity to change clothes, brush my teeth, and go with Jamie to have my first meal in about 24 hours down in the hospital food court. When we returned, Miles was having his own meal! The PICU doctor, one of my favorites, had given orders that he be allowed to have food and drink. Shortly after that, Jamie took Mom to our house so she could settle in and they could pick up Gisèle from school. He came back a bit later, and we waited outside the room while nurses held Miles down for another eye exam. Then we settled in for another hour or so before getting the news that Miles was being transferred to a regular room for the remainder of his treatment. Progress!

Wednesday, March 13, 2013

It started on January 23rd, when Grandpa was diagnosed with cancer. His health deteriorated quickly, and he died on February 21st. Grandpa is the first grandparent I've lost, and I've had a hard time with it. The hardest thing has been to watch my Dad go through losing his dad.

Grandpa turned 78 on Wednesday, January 22nd, and then died early the next morning. I flew up to Kansas City on Saturday and stayed for the viewing on Sunday and then the funeral on Monday. I loved being able to spend the time with Mom & Dad and my brother and sisters who were able to make it, but the whole trip felt surreal. Every time we talked about going to "Grandma's house" it felt like we were making a mistake.

A photograph I took of Grandpa in July 2010 was used on the back of the program. It's how I remember him best - with a grin on his face and a twinkle in his eye, right in the middle of telling a joke.

A snowstorm delayed my return home, so I didn't get to come back to Jamie, Gisele, and Miles until Wednesday night. Jamie had let me know while I was gone that Miles was sick, but it was worse than I thought, and I got the full impact of it when I walked in the door Wednesday night.

Monday (the day I was originally supposed to come home), Miles had been sent home from Pre-K/daycare because he was complaining of not feeling good, and had a bit of a rash around his mouth, as well as some redness and tenderness under his arms and in his groin area. Jamie took him to the doctor, who said it was something viral, and advised a dose of benadryl, followed by Allegra the next day. She said that should have him feeling better. Neither Miles nor Jamie slept much Monday night, and Miles's rash just got worse throughout Tuesday. By Wednesday morning, he had open sores/blisters around his mouth, so Jamie took him back to the doctor. This time, she tested him for strep (which was positive) and gave him an antibiotic shot, some oral steroids, and a cream for the rash. She said he should be feeling a lot better in 24 hours, and told Jamie to give her a call the next morning (Thursday) with an update.

When I walked in the door Wednesday night and saw Miles, I had to hold back tears. He looked like he had some form of leprosy - there were open sores covering his mouth and lower cheeks, and he had open blisters elsewhere on his body. He was also covered in calamine lotion (the only thing that brought him any relief), so what was visible of his arms and legs was white. He hadn't slept the previous 2 nights, so he had dark purplish red circles around his eyes. Jamie wasn't looking much better, and broke down when I came in. We decided to try to make it through the night with him and evaluate everything in the morning, since the doctor said he should be feeling better then.

Friday, March 1, 2013

This will be short - all the updates are on Twitter, and most of those have posted to Facebook, as well. The official diagnosis is the Scalded Skin type of Staph, where your skin comes off in sheets if touched. He's at TX Children's in the Med Ctr, and will be moved from the Pediatric ICU to a regular room sometime, hopefully today, to continue treatment w/ antibiotics and morphine. Please keep him in your prayers.